Evidence map›Paper›PMID 26685073›Full record

Observational studyThe Journal of pediatrics2016

Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation.

Karen Uzark, Victor Zak, Peter Shrader, Brian W McCrindle, Elizabeth Radojewski, James W Varni, Kaitlyn Daniels, Jill Handisides, Kevin D Hill, Linda M Lambert and 5 more

Registry-linked trialAbstract readMulticenter StudyObservational Study
In one paragraph

Observational study in The Journal of pediatrics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT00132782 (Relationship Between Functional Health Status and Ventricular Performance After Fontan), which is not on this map. Cited by 31 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
31citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT00132782 completednot on this map

Relationship Between Functional Health Status and Ventricular Performance After Fontan (A Trial Conducted by the Pediatric Heart Network)

TypeobservationalSponsorCarelon ResearchRan2003 to 2004Enrolled546ConditionsDefect, Congenital Heart, Arrhythmia
3 · Its place in the literature

Who cites it

31 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Health-related quality of life in adults with tetralogy of Fallot repair: a systematic review and meta-analysis.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021
    Pooled it
  2. Pooled it
  3. Pooled it
  4. Trial
  5. Article
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  7. Fontan Route Remodeling over Time: A Longitudinal Quantitative 3D Case Series.Journal of cardiovascular development and disease · 2026
    Article
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  16. Review
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Karen UzarkUniversity of Michigan Mott Children's Hospital, Ann Arbor, MI. Electronic address: karenu@med.umich.edu.
Victor ZakNew England Research Institutes, Watertown, MA.
Peter ShraderNew England Research Institutes, Watertown, MA.
Brian W McCrindleUniversity of Toronto Hospital for Sick Children, Toronto, Ontario, Canada.
Elizabeth RadojewskiUniversity of Toronto Hospital for Sick Children, Toronto, Ontario, Canada.
James W VarniTexas A & M University, College Station, TX.
Kaitlyn DanielsChildren's Hospital of Philadelphia, Philadelphia, PA.
Jill HandisidesBoston Children's Hospital, Boston, MA.
Kevin D HillDuke University Medical Center, Durham, NC.
Linda M LambertPrimary Children's Hospital, Salt Lake City, UT.
Renee MargossianBoston Children's Hospital, Boston, MA.
Victoria L PembertonNational Heart, Lung, and Blood Institute, Bethesda, MD.
Wyman W LaiColumbia University Medical Center, New York, NY.
Andrew M AtzMedical University of South Carolina, Charleston, SC.
Pediatric Heart Network Investigators

Funding

Pediatric Heart network DCCU10HL068270 · NHLBI · NEW ENGLAND RESEARCH INSTITUTES, INC. · PI MILLER, JULIE ELAINE, TRACHTENBERG, FELICIA LYNN · 2011 to 2016
$44.9M
Ventricular Volumes and Varability (VVV)U01HL068270 · NHLBI · NEW ENGLAND RESEARCH INSTITUTES, INC. · PI SLEEPER, LYNN A · 2001 to 2010
$40.3M
Pediatric Heart Network: Follow-up of the Single Ventricle Reconstruction TrialU01HL068290 · NHLBI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI LAI, WYMAN W · 2001 to 2010
$4.1M
Pediatric Heart Disease Network: CHOP MembershipU01HL068279 · NHLBI · CHILDREN'S HOSP OF PHILADELPHIA · PI VETTER, VICTORIA L · 2001 to 2010
$3.7M
Randomized Therapeutic Trials in Pediatric Heart DiseaseU01HL068285 · NHLBI · CHILDREN'S HOSPITAL BOSTON · PI NEWBURGER, JANE W. · 2001 to 2010
$3.4M
Randomized Clinical Trials for Pediatric Heart DiseaseU01HL068281 · NHLBI · MEDICAL UNIVERSITY OF SOUTH CAROLINA · PI SAUL, J PHILIP · 2001 to 2010
$3.2M
Clinical and genomic responses to remote ischemic preconditioningU01HL068288 · NHLBI · HOSPITAL FOR SICK CHLDRN (TORONTO) · PI MCCRINDLE, BRIAN W · 2001 to 2010
$3.0M
Intermountain Pediatric Heart Disease Research CenterU01HL068292 · NHLBI · UNIVERSITY OF UTAH · PI MINICH, L. LUANN · 2001 to 2010
$2.7M
The Duke-UNC-CH Pediatric Cardiology Clinical CenterU01HL068269 · NHLBI · DUKE UNIVERSITY · PI LI, JENNIFER S · 2001 to 2010
$2.6M
Pediatric Heart Network Regents of the University of MichiganU10HL109737 · NHLBI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI GOLDBERG, CAREN S, OHYE, RICHARD G · 2011 to 2015
$2.3M
Pediatric Heart Network University of UtahU10HL109743 · NHLBI · UNIVERSITY OF UTAH · PI MINICH, L. LUANN, WILLIAMS, RICHARD VINCENT · 2011 to 2015
$2.2M
NHLBI NIH HHS HL068269NHLBI NIH HHS HL068270NHLBI NIH HHS HL068279NHLBI NIH HHS HL068281NHLBI NIH HHS HL068285NHLBI NIH HHS HL068288NHLBI NIH HHS HL068290NHLBI NIH HHS HL068292NHLBI NIH HHS U01 HL068269NHLBI NIH HHS U01 HL068270NHLBI NIH HHS U01 HL068279NHLBI NIH HHS U01 HL068281NHLBI NIH HHS U01 HL068285NHLBI NIH HHS U01 HL068288NHLBI NIH HHS U01 HL068290NHLBI NIH HHS U01 HL068292NHLBI NIH HHS U10 HL068270NHLBI NIH HHS U10 HL109737NHLBI NIH HHS U10 HL109743
6 · The paper itself

Abstract

objectivesTo assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. STUDY

designCross-sectional. The Pediatric Quality of Life Inventory (PedsQL) was administered to 408 survivors of Fontan ages 13-25 years enrolled in the Pediatric Heart Network Fontan Follow-up Study. Subjects also completed either the Child Health Questionnaire (age <19 years) or Short Form Health Survey (age ≥ 19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined.

resultsMean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001).

conclusionsSurvivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood.

trial registrationClinicalTrials.gov: NCT00132782.

Indexed as

Quality of LifeAdolescentAdultAge FactorsCross-Sectional StudiesFemaleFollow-Up StudiesFontan ProcedureHumansMaleSurveys and QuestionnairesSurvivorsUnited StatesYoung Adult

Identifiers

PMID26685073
PMCPMC4769899

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.